Speaker

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  Elvina Sakellariou Research Coordinator, Data Manager, and Project Manager at the Duchenne Data Foundation
  

  Elvina Sakellariou

  Research Coordinator, Data Manager, and Project Manager at the Duchenne Data Foundation

  Elvina Sakellariou is a Molecular Biologist and holds a PhD in Medical Genetics. She has an extensive experience on the study of muscular dystrophies, with a special focus on the development of a humanized mouse model for the study of the FSHD pathophysiology.
  Elvina is a Research Coordinator, Data Manager, and Project Manager at the Duchenne Data Foundation (parent-led organization with a focus on DMD data research, based in the Netherlands), where she supports the design, coordination, and governance of paediatric research and data-driven initiatives in the rare disease field. Her work focuses on data quality, FAIR and federated data approaches, design of patient- centred digital tools, communication and dissemination activities, and the integration of patient-driven data into translational research. Elvina is particularly committed to strengthening the connection between research infrastructures, disease-specific initiatives,
  and patient-centred data ecosystems, with the goal of accelerating high-quality, and impactful paediatric translational research across Europe.